For over three years, the Brow family have called Ronald McDonald House Charities South East Queensland (RMHC SEQ) their home-away-from-home.
When Kenny was born, it was clear something was wrong. His presentation was extremely floppy and he had very low muscle tone. It wasn’t until he was six months old where he received his diagnosis through a clinical trio exome test. Kenny had an error in the Sox 11 gene, and at the time there were only 14 people diagnosed with this error in the world, none of which were in Australia. Further testing also revealed a diagnosis of Kallmann syndrome – a condition causing the body to not produce enough sex hormones.
“Being so close to the hospital makes life much easier for Kenny and I, especially with his feeding issues. The kitchen facilities are incredibly helpful and the play areas allow Kenny to interact with other children and keep him stimulated during our stay.”
Kenny has had a nasal gastric tube since birth and undergone a number of procedures to help with his condition. Living in remote North Queensland, Kenny and his mum Carly, have needed to travel to Brisbane to access the required health services – leaving his dad Leighton and big brother Bruce at home in Airlie Beach.
Throughout their times in Brisbane, Kenny and Carly have been welcomed with open arms at Ronald McDonald House South Brisbane, where they are provided with accommodation and support close to the medical care he needs.
“From the bottom of our hearts, we cannot thank RMHC SEQ enough for their ongoing support. Kenny will live with this rare genetic disorder, Kallmann Syndrome and a global developmental delay for the rest of his life and we will need to continue travelling to Brisbane for the foreseeable future. Whilst we are not out of the woods yet, we are so grateful to know we can always count on RMHC SEQ to be there for us in times of need.”
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